My name is Christine. I’m 54 years old and have always lived in Massachusetts.
I’m married with five children and one granddaughter. When the kids were little, I was a full-time mom, but as they got older and started school, I tried a few different jobs. In the end, I found that I enjoyed working in the medical profession and became a certified nursing assistant (CNA). I worked in a hospice for a while, but now I provide private, in-home care.
When I was 13, I started having seizures where my left arm would shake. At the time, I didn’t realize they were seizures. I just thought that maybe I had a pinched nerve.
Then one night a few weeks later, I had a grand mal seizure and ended up in the ER. I saw a neurologist who ran some EEG tests and put me on anti-seizure medications, but even then, no one told me I had ‘epilepsy’. I just knew that I was being treated for a seizure disorder.
For most of my life, the medications did a good job controlling my seizures. Over the course of 15 years, I only had two or three grand mal seizures.
Then about seven years ago, the medicines started becoming less effective. My neurologist kept trying new medicines, but I was still having a lot more seizures. Five or six times a month, I would wake up with my left arm shaking uncontrollably and the arm would continue shaking throughout the day with 40 to 50 partial seizures.
At first, I would just call in sick when I had one of these seizures. As the seizures became more and more frequent, I realized I would have to leave my job. Soon after that, I gave up driving, because I just didn’t feel safe behind the wheel anymore.
Eventually, my neurologist told me that continuing to change medicines would not be the answer to the problems I was having. He ran a lot of tests and told me that I would be a good candidate for the RNS System.
At that point, I was still unsure about it. I didn’t want anyone to cut into my head! I kept hoping that I could find a medicine that would get my seizures back under control.
After a few more months of the same issues – lots of seizures, more medicine changes, no improvements – I had a long conversation with my husband about whether the RNS System might be the right choice for me after all.
I told him, “I don’t want to live like this anymore. I don’t have an independent life.” I couldn’t drive or take care of my kids. The roles had been reversed and my children were taking care of me. I made the decision to get the RNS System.
In April 2015, I was admitted to Massachusetts General Hospital. First, they did some tests to figure out exactly where the seizures were originating so they would know where to place the electrodes. A few days later, they did the actual surgery to implant the RNS System.
The surgery went much, much better than I had expected. The hardest part of the whole process was the fact that they shaved my head more than I expected. But even that was OK, since it all grew back in the end.
Overall, including the tests and the RNS System placement, I was in the hospital for about a week and then discharged to home. I did have some seizures at first. I had thought they would turn the RNS System on right away, but actually they ended up waiting a few months to collect data and figure out the right settings to program the device.
Since they switched the device on in autumn 2015, I’ve only had three seizures in the past three years.
When I visit my doctor, he points out seizure activity in the data from the RNS System, but I never feel the seizures that the device stops. I can’t feel the device working either, so I’m not even aware of the seizures it stops until I review the data with my doctor.
Having the RNS System has just become part of my usual routine. I get up in the morning, swipe the wand – a small device that plugs into my laptop – over my head to transmit data to my physician and then take my medications and get on with my day. I don’t even think twice about the RNS System after that.
Before I got the RNS System implanted, I felt like a slave to epilepsy. I felt that epilepsy was controlling me, making me stay home all the time because I didn’t want to take the risk of going out to the mall or going out to dinner with my family and having a seizure in the middle of the meal.
Now, I’m able to do the things I want, whether that means having dinner in a restaurant, going downtown to do some shopping or taking a trip to Montana to visit my daughter and her new baby. I was able to help take care of my granddaughter for a few weeks after my daughter went back to work after maternity leave. I even felt comfortable enough to fly back home to Massachusetts on my own.
With the RNS System stopping the seizures, I was able to start driving again and then I went back to work.
One other nice thing about having the RNS System is that I have been able to work with my doctor to stop taking two medications and lower my dosage on the other two that I still take. When I was taking all the medicines, I often felt groggy—like I was walking around in a dream.
The medicines also gave me memory problems. I could still remember things, but the memories were fuzzy. Once I stopped taking as many drugs, it felt like someone pulled open the curtains and let in more light. Suddenly I could think more clearly and remember things in sharper detail.
It was good timing, because my daughter got married after I had the device put in. It was nice to be able to participate in all the wedding related activities with her, and I’m glad that I can still remember it clearly now.
One thing I like about the RNS System is that the device is adjustable. About six months ago, I was having some problems with seizure activity and my doctor was able to make a programming adjustment on the device, which seemed to do a good job in terms of getting the seizure activity under control again. For me, the adjustments are easy and just happen at my regular doctor appointments. I like that my doctor has that option—people change all the time, so it makes sense for the device settings to be able to change too.
If someone living with epilepsy was considering whether to have the RNS System implanted, I would say, “Don’t hesitate.”
I’m so glad to be able to serve as an RNS Patient Ambassador. I postponed the surgery for months after my physician told me that I was a good candidate, because I was afraid. In retrospect, I think I could have overcome my fears more quickly if I had been able to talk to someone who had the device and ask personal questions like, “What does it really feel like to have the device implanted? Does it hurt when it’s working?”
You can’t ask your doctor those sorts of questions. You can’t ask anyone else in your life. You need to ask someone who has lived through it.
Published on: October 29, 2018
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.